Tag Archives: NIH

Every Spring, individuals with Dystonia from throughout this vast country lend their enthusiasm, personal struggles and impassioned advocacy to advance mission critical policies aimed at eradicating Dystonia and improving patient care. The power of advocacy is nothing more – and nothing less – than the power of people banding together in pursuit of a common cause. The collective wealth of the experiences we recount illustrates the importance of the policies we promote. Our participation reminds those inhabiting halls of power in Washington that Dystonia is on the map…to stay…until we find the means to whip this debilitating condition.

On the flip side, we gain tremendous gratification from the knowledge we’re actively pursuing a cure, not merely awaiting one. One of the most difficult aspects of living with chronic illness is the degree of helplessness we exercise over the villain holding our bodies hostage. Participating in research studies, raising needed funds and advocating for important policies are direct and meaningful contributions that imbue us with a sense of purpose. Remember, no one chef bakes this cake. The search for a cure is a team effort reliant upon medical and research professionals, healthcare partners, patients, fundraisers, advocates, and all who support us. The accumulation of efforts we undertake propels us forward.

Those who can’t make Advocacy Day should take heart. Flocking to DC for a day of oral combat is by no means the only way to muster our numbers. The strength of our platform is fueled by the collective resonance of our individual appeals, assembled piece by piece. We needn’t travel great distances or endure a whirlwind of meetings jam-packed with issues. Advocacy can be as simple as a call or email to your local politicians introducing your health challenges and policy agenda. Time-sensitive “action alerts” requesting specific communications offer additional opportunities for participation “from a distance.” Sweeping displays of strength are composed of thousands of “tiny” efforts. We need every available voice raising our concerns as it’s impossible to know who or how many will tip the balance.

By no means are we building castles in the air. Health activism conducts serious business. Washington is steeped in special interests strong-arming policy and politicos jostling for position. Everyone with an interest in tangible outcomes bears responsibility for expressing an opinion about the actions – and inactions – of our government and reminding elected representatives why we entrusted them with their authority in the first place. Only by telling our stories and asserting our legislative programs can we be heard. Dystonia’s continued eligibility for DOD research funding is one potent example of the tangible outcomes our sojourns to Capitol Hill produce. I urge patents, friends and families to heed an imperative for action that yields concrete results. Armed with determination and an email program, you can even make a difference from the comfort of your home.

When I was a little girl, my mom taught me the importance of showing up for the party. Boy, was she right!

As I muse over my experience at Dystonia Advocacy Day, I ponder the significance of our actions. While we volleyed many an impassioned speech, I can’t help but wander to the conclusion it all comes down to showing up. Implanted with medicine pumps and medical devices, toting our loathsome pills, a few sporting motorized scooters or walking sticks, Dystonia hailed to D.C. armed with an arsenal of war stories to announce our presence.

Tasked with a day of legislative sorties on Capitol Hill, putting ourselves out there is no small matter. Showing up means summoning the courage to relive our most traumatic moments with a series of strangers, some paying only polite attention to our deepest frustrations. Showing up means risking an emotional bottleneck that messes with the best-rehearsed oration. It entails listening to nasty words like “sequestration” and watching life issues we battle every day transformed into talking points in a gridlocked budget process. Showing up denotes enduring a hectic, stressful schedule that wrecks havoc with our Dystonia for the same cause. It makes a simple but profound statement how we need help from our government to enjoy our freedom to move. Showing up is worth 1,000 pictures times 1,000 words…I can only hope mine were fully understood but I know my attendance was duly noted.

I must give mention to Team NY, which certainly “showed up” for business. After lending 2 of our crew to switch-hit for NJ, we comprised 3 Dystonia ladies, 1 husband and 1 father determined to wield our expertise. After all, Congress has much to learn about Dystonia. We opened our hearts, laughed our way through our emotions, swooped in to support one another, even caught a ride on the exclusive underground train. Talk about tired; by the end of the day, we could barely remember our personal details!

Here’s to fellow troopers Allison London, Ron Hersh, Denise Gaskell, Greg Gaskell, and members in absentia, Rachelle Robert and Christina Pepi, who were with us in spirit. Traipsing through the Halls of Power with the top soldiers in the state made my day!

If you plan to change the world – or even one small corner – start by showing up for the party!

Highlights from the Bronx Zoo Walk on Oct. 4, 2015

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Email: ps@dystoniamuse.com

What seems like a lifelong experience with Dystonia began with a "mis-step" when I was 8-1/2. Dystonia may have staged a coup over certain body parts but my heart and soul remain firmly my own. I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health activist.